Nolte-Buchholtz Silke, Zernikow Boris, Wager Julia
Department of Pediatrics, University Hospital Carl Gustav Carus, Technische Universität Dresden, Fetscherstrasse 74, 01307 Dresden, Germany.
Department of Children's Pain Therapy and Pediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, 58455 Witten, Germany.
Children (Basel). 2018 May 31;5(6):66. doi: 10.3390/children5060066.
In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic and clinical characteristics of children referred to SPPHC and to compare patients with cancer and non-cancer conditions. The prospective multicenter study includes data on 75 children (median age 7.7 years, 50.7% male). The majority had non-cancer conditions (72%). The most common symptoms were cognitive impairment, somatic pain, impairment in communication or swallowing difficulties. Swallowing difficulties, seizures, and spasticity occurred significantly more often in non-cancer patients ( < 0.01). Cancer patients received antiemetics significantly more often (permanent and on demand) than non-cancer patients ( < 0.01). Significantly more non-cancer patients had some type of feeding tube (57.3%) or received oxygen (33.3%) ( < 0.01). Central venous catheters had been fitted in 20% of the patients, mostly in cancer patients ( < 0.001). Tracheostomy tubes (9.3%) or ventilation (14.7%) were only used in non-cancer patients. In conclusion, patients referred to SPPHC are a diverse cohort with complex conditions including a large range of neurologically originating symptoms. The care of pediatric palliative care patients with cancer is different to the care of non-cancer patients.
在德国，每个患有无法充分控制症状的危及生命疾病的儿童依法有资格获得专业的儿科姑息家庭护理（SPPHC）。本研究的目的是描述被转诊至SPPHC的儿童的人口统计学和临床特征，并比较癌症和非癌症疾病患者。这项前瞻性多中心研究纳入了75名儿童的数据（中位年龄7.7岁，50.7%为男性）。大多数儿童患有非癌症疾病（72%）。最常见的症状是认知障碍、躯体疼痛、沟通障碍或吞咽困难。吞咽困难、癫痫发作和痉挛在非癌症患者中出现的频率明显更高（<0.01）。癌症患者比非癌症患者更频繁地（长期和按需）接受止吐药治疗（<0.01）。明显更多的非癌症患者使用了某种类型的喂食管（57.3%）或接受了氧气治疗（33.3%）（<0.01）。20%的患者安装了中心静脉导管，大多数是癌症患者（<0.001）。气管造口管（9.3%）或通气（14.7%）仅用于非癌症患者。总之，被转诊至SPPHC的患者是一个多样化的群体，病情复杂，包括一系列神经源性症状。儿科姑息治疗中癌症患者的护理与非癌症患者的护理不同。
